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Questions Regarding Results after PRRT Treatment

Posted by markmark007 @markmark007, Dec 17, 2023

My wife completed her fourth PRRT treatment in late August 2023. (SPEC scans were done in conjunction with PRRT treatments)
She is scheduled in early January 2024 for Cu64 dotatate / PET- CT procedure.
Note 1: she had a Ga68 dotatate / PET - CT on 02/01/2023.
Note 2: she is concerned about possible side effects of radiation use in scans - too much radiation.
Note 3: we are communicating the following items with her doctor, it is also beneficial to receive experiences from others.
Note 4: We understand the differences in half-life of these radiotracers.
1. Is this a typical post PRRT procedure?
2. What other procedures / scans have been used?
3. Should the same radiotracer be used for each scan?
4. Can the radiological reports from these two scans be effectively compared (e.g. Cu64 vs. Ga68) given the difference in radiotracers?

We appreciate receiving any of your comments / experiences.
Many thanks,
Mark

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phyllisden | @phyllisden | Aug 4 3:52pm

Looks like the last time I posted was in May 2024. Things have definitely changed. Back then I was doing pretty ok, but last year things started flaring again and the latest PET/CT showed some increase in activity and size of two tumors - one near my liver and one near my heart, plus I lost 15 lbs in 2 weeks and developed Malabsorption disorder. So even though I could receive the PRRT treatment at Mayo in 2021 at half dosage, I was still stable for a little over two years. Anyway! I’m doing PRRT again - have had three sessions so far and it’s been a roller coaster ride. We have tried multiple medications to try to better control the diarrhea (including opium - terrible taste). I mainly just take a box or two of Imodium a week.
Just wondering if anyone else has done two rounds of the PRRT and how did it go a second time. And what kind of results did you have. I know it’s probably fairly rare for someone to only be able to handle the full dosage.
Thanks.

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Profile picture for bren1
bren1 | @bren1 | Aug 5 11:00am
In reply to @phyllisden "Looks like the last time I posted was in May 2024. Things have definitely changed. Back..." + (show)
Profile picture for phyllisden @phyllisden

Looks like the last time I posted was in May 2024. Things have definitely changed. Back then I was doing pretty ok, but last year things started flaring again and the latest PET/CT showed some increase in activity and size of two tumors - one near my liver and one near my heart, plus I lost 15 lbs in 2 weeks and developed Malabsorption disorder. So even though I could receive the PRRT treatment at Mayo in 2021 at half dosage, I was still stable for a little over two years. Anyway! I’m doing PRRT again - have had three sessions so far and it’s been a roller coaster ride. We have tried multiple medications to try to better control the diarrhea (including opium - terrible taste). I mainly just take a box or two of Imodium a week.
Just wondering if anyone else has done two rounds of the PRRT and how did it go a second time. And what kind of results did you have. I know it’s probably fairly rare for someone to only be able to handle the full dosage.
Thanks.

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I had 4 prrt and the side effects were less each time I suppose my body got used to it. The 4th one no side effects at all and about 10% shrinkage on the tumors. Stable at the moment.

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tfoucaul | @tfoucaul | Aug 5 8:53pm
In reply to @phyllisden "Looks like the last time I posted was in May 2024. Things have definitely changed. Back..." + (show)
Profile picture for phyllisden @phyllisden

Looks like the last time I posted was in May 2024. Things have definitely changed. Back then I was doing pretty ok, but last year things started flaring again and the latest PET/CT showed some increase in activity and size of two tumors - one near my liver and one near my heart, plus I lost 15 lbs in 2 weeks and developed Malabsorption disorder. So even though I could receive the PRRT treatment at Mayo in 2021 at half dosage, I was still stable for a little over two years. Anyway! I’m doing PRRT again - have had three sessions so far and it’s been a roller coaster ride. We have tried multiple medications to try to better control the diarrhea (including opium - terrible taste). I mainly just take a box or two of Imodium a week.
Just wondering if anyone else has done two rounds of the PRRT and how did it go a second time. And what kind of results did you have. I know it’s probably fairly rare for someone to only be able to handle the full dosage.
Thanks.

Jump to this post

I think the 1st 4 prrt treatments kept things stable for year and half. Tried different therapies since then. I will be getting pet scan in week to see if 2 more doses will work then combine that with keytruda if the insurance company OKs it.

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Profile picture for dbamos1945
dbamos1945 | @dbamos1945 | Aug 8 1:12am
In reply to @dbamos1945 "@tjatsaufr: I relate to your concern over radionuclide radiation; however, the nuclear medicine department at your..." + (show)
Profile picture for dbamos1945 @dbamos1945

@tjatsaufr: I relate to your concern over radionuclide radiation; however, the nuclear medicine department at your facility follow strict guidelines to protect yet target your tumors for destruction! I had great response and the tumors have continued to shrink in size for the last 8 months AFTER the last PRRT infusion. My small intestine/stomach primary is much smaller today than it was on diagnosis. 🙂
My suggestions: Prepare your body, mind and spirit prior to treatment. I visualized every little discomfort in my stomach as proof the treatment was working. I kept positive thoughts when my fatigue lingered. I had learned how the treatment was formulated just to target the cancer cells, enter them and “blow up” the nucleus. I consider Beta PRRT Lutathera a miracle drug that my body needed! Best of health to you…

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@tsjaufr: Best thoughts are with you and hope you are feeling strong in this treatment decision. May your body respond well and your tumors stop giving you trouble! You are stronger than you feel and have the intellect and stamina to live a peaceful and satisfying quality life.
You have the positivity of Mayo Connect peer patients with you!
Stay strong! Best, dbamos1945

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